General Practice care approaching the end-of-life
13 MINUTE READ
In late 2019, I was inspired to read Atul Gawande’s Being Mortal1 after reading a book review in Luke’s Journal, Laughter: The best medicine. Vol 24. No 2. 2019.2
It is one of the few books that has caused me to laugh out loud when sharing passages with whoever happens to be around to listen – quite unexpected when considering the subject matter! Nevertheless, it became the springboard for many conversations about end of life with my patient population.
I have been in my current General Practice for 26 years. The patients who started with me back then are now in their 70s, 80s and 90s. We know each other well. I was really challenged when one 93-year-old patient (who had been admitted to hospital with chest pain twice in the preceding month) said she didn’t want to keep getting taken to hospital with heart issues, she just wanted to be kept comfortable and die at home. It took a bit of juggling to figure out how to help her do that whilst still giving her comfort and care at the end of life. Along the way, I learnt about ACAT (Aged Care Assessment Team) referrals, frailty, advanced care directives, ambulance plans and palliative care. These subjects had hitherto been almost unknown in my practice. However, I now initiate conversations in these areas as part of whole-of-life care.
Age is just a number. We all have patients in their nineties who are fighting fit and others in their sixties who are really struggling with their health. What triggers me to start ‘end of life’ discussions with people is the beginning of their health deterioration, in particular, their frailty. There are a number of frailty scales, but there are some giveaways: patients start falling, they are unable to care for themselves independently, their cognition deteriorates. Formal frailty scores3 include indicators such as: weakness, fatigue, weight loss, low physical activity, poor balance, low gait speed, visual impairment and cognitive impairment. When some of these factors become evident in a patient’s life, I start asking deeper questions in planning for their future.
In the past, patients used to travel along quite well, and then they would have a heart attack, or fall, or cancer, and die within a relatively short time-frame (Trajectory 1 – See Figure 1 below4).
Nowadays, they may still have those big events… but often we save them – a little worse off than previously, but they can keep going until the next event … and we save them, and so on (Trajectory 2 – Figure 14). So, instead of a sudden event leading to an imminent death, the end of life is a slow stepped decline of gradual organ failure. A third option is becoming increasingly common – function dwindles away, often ending in dementia (Trajectory 3 – Figure 14). In 2018, dementia was the second leading cause of death in Australia, accounting for almost 14,000 deaths (ABS 20195). For women, dementia was the leading cause of death (nearly 9000 deaths), while it was the third leading cause for men (nearly 5000 deaths). In 2018, an estimated 376,000 people in Australia had dementia. It is estimated that by 2030, this will increase to around 550,000 (Figure 26). We need to be having these discussions before decline precludes capacity.
It is at the first fall/heart attack/stroke/cancer diagnosis that it makes sense to start these discussions – the event giving a natural focus to consider the “what ifs…?”. The 75-year-old health assessment is also an opportunity to discuss advanced care directives for the increasing number of those who are otherwise healthy at this age. No one likes thinking about death, even though we all know that it’s inevitable. It is easy to keep putting it off, thinking that we will always have more time – until it is too late.
Giving patients an advanced care directive form7 to fill out and discuss with their loved ones is often a matter-of-fact way to start having discussions around this topic. Personally, I make a note of when I have given a patient a form, and 3 months later raise the topic monthly (if appropriate) to try and get some discussion happening around this rather macabre subject. It is less distressing for everyone to have these conversations at a hypothetical ‘arms-length’ than when in the middle of a crisis.
Advanced care directives (ACDs) differ, but usually include basics such as next of kin, enduring guardianship, power of attorney details and questions about what is acceptable or not at the end of life. Questions include:
1. Do you want to be resuscitated if your heart stops?
2. Do you want aggressive treatments such as intubation and mechanical ventilation?
3. Do you want antibiotics? Oral at home, or IV in hospital?
4. Do you want tube or intravenous feeding if you can’t eat on your own?
5. If you are unable to speak for yourself, who would you like to speak for you?
6. Have you discussed these things with that person?
When patients bring in ACD paperwork, it is an opportunity to chat with them about their thoughts and plans, and to clarify questions or discuss fears. More importantly, it gives family, friends or neighbours (who are more likely to be present when an event occurs) knowledge of the patient’s wishes in order to advocate on their behalf at the time. Often there is a chance to reiterate that dying is a natural process and part of life, and to consider whether death at home surrounded by loved ones is preferable to death in a hospital surrounded by machines. Many would rather not push for ‘prolonging life, whatever the cost’. This can be a great relief to relatives who might otherwise feel guilty for refusing medical treatment, or withdrawing life-prolonging interventions. Annual review of ACDs helps to accommodate changing circumstances and gives an opportunity to update legal details (such as appointing the enduring guardianship and power of attorney) as well.
Discussion involving the four pillars of bio-psycho-socio-spiritual health can be particularly helpful. Using the illustration of health being like a table with four sturdy legs, it is easy to see that when the biological leg is weakening, it is important to reinforce the other three to keep the table stable. Treating depression and anxiety, improving social connectedness (both in person and using technology – fast-tracked by COVID-19!), and considering spiritual meaning and purpose all contribute to a greater sense of well-being, even as the body fails. Organising ACAT involvement to minimise time and energy spent on activities of daily living (ADLs) and to maximise time spent in enjoyable pursuits is often helpful. Patients are invariably keen to prevent falls and delay dementia if they know that this contributes to better quality of life.
Falls Prevention clinics, over-55 exercise classes, line-dancing, tai chi, ukulele groups or language learning often provide multiple benefits – fun, social interactions, improved balance and reflexes, and instilling a sense of meaning and dignity. It is well worth investing time and effort into incorporating all four pillars into everyday consultation. Courses such as PRIME8 and Saline Process9 are particularly helpful in establishing comfortable spiritual history-taking and opening patients to consider that aspect of life. CMDFA has substantial links with both.10,11
“Arriving at an acceptance of one’s mortality and a clear understanding of the limits and the possibilities of medicine is a process, not an epiphany.”
Once a specific event or diagnosis has been made, discussion about end-of-life care may not be possible in general practice. The hospital is often the setting for major organ failure or cancer care. If it looks like cancer or other catastrophic organ failure is a possibility, a GP may be able to give the patient the option of returning for further conversations even if the majority of future care is in the hands of the hospital or oncology team:
“I often don’t see a patient much after a diagnosis such as this since the hospital machine takes over, but my door is always open here for you and your family to talk if you would like to do so.”
Atul Gawande1a describes the following:
[Medical personnel may] focus on laying out the facts and the options… [However, a patient may be] overwhelmed by anxiety – anxiety about death, anxiety about suffering, anxiety about loved ones, anxiety about finances… No one conversation can address them all. Arriving at an acceptance of one’s mortality and a clear understanding of the limits and the possibilities of medicine is a process, not an epiphany.
There is no single way to take people with terminal illness through the process but there are some rules … You sit down. You make time. You’re not determining whether they want treatment X versus Y. You’re trying to learn what’s most important to them under the circumstances – so that you can provide information and advice that gives them their best chance of achieving it. This process requires as much listening as talking …
The words you use matter. You should say, “I wish things were different.” You don’t ask, “What do you want to do when you are dying?” You ask, “If time becomes short, what is most important to you?”
Questions for a general practitioner might include:
1. What do you understand your prognosis to be?
2. What are your concerns about what lies ahead? (fears)
3. What kinds of trade-offs are you willing to make?
4. What do you want to be able to do to make a treatment worthwhile? (hopes)
5. How do you want to spend your time if your health worsens?
6. Who do you want to make decisions if you can’t?
It may be helpful to consider whether one’s fears or one’s hopes should determine what to do. Conversations such as this with a family member present can make a huge difference in making decisions when the time comes. At the end, it is helpful for them to know what the patient views as worth fighting for, and when to surrender if that cannot be achieved. This minimises the hospital default of fighting to the bitter end, making end of life more peaceful and decisions less distressing.
Euthanasia or physician-assisted dying may also be raised. People are often concerned about the process of dying and, unsurprisingly, the idea of falling asleep and not waking up is attractive. This may be especially so if they themselves have witnessed someone dying with substantial suffering or indignity. If this is the case, it is wise to dedicate a separate consultation to hear the patient’s story and to listen to their desires and concerns. Legal requirements regarding physician-assisted dying vary from state to state, and may change in the future. As yet, in NSW, I can state that I do not want to be (nor may I legally be) the one who deliberately provides them with the means of dying. However, I can reiterate that my aim is to keep them comfortable during the dying process, and support their wish to be at home, hospice or hospital. Though assisted living is harder than assisted dying, its possibilities are far greater as well.
To this end, ambulance care plans and the involvement of the local palliative care team is helpful. GPs can write instructions so that when an ambulance is called, the paramedics know whether they are to transfer the patient to hospital, or to keep the patient comfortable at home. Medication options and doses are specified, as well as details of ongoing care and contact numbers. Ambulance care plans can either be written generally,12 or for palliative care.13 This second option is more relevant to end-of-life care, but may depend on whether the local palliative care team is willing to accept referrals not involving imminent death, e.g. ischaemic heart disease, heart failure, COAD, renal disease, etc.. Discussion and relationship with your local palliative care team is highly recommended to facilitate a smooth transition at the end of life, especially if a patient would prefer to be cared for at home, rather than transferred to hospital.
“Discussion and relationship with your local palliative care team is highly recommended to facilitate a smooth transition at the end of life.”
I’ll leave you with a few more words from Atul Gawande1b:
…[S]ociety has forgotten what scholars call the ‘dying role’ and its importance to people as life approaches its end. People want to share memories, pass on wisdom and keepsakes, settle relationships, establish their legacies, make peace with God, and ensure that those who are left behind will be okay. They want to end their stories on their own terms. This role is… among life’s most important, for both the dying and those left behind. And if it is, the way we deny people this role… is cause for everlasting shame. Over and over, we in medicine inflict deep gouges at the end of people’s lives and then stand oblivious to the harm done.
…endings matter, not just for the person but, perhaps even more, for the ones left behind1c… We’ve been wrong about what our job is in medicine. We think our job is to ensure health and survival. But really it is larger than that. It is to enable well-being. And well-being is about the reasons one wishes to be alive. Those reasons matter… all along the way.1d
Whole-person care throughout life is a great privilege, for GPs in particular. As Christians, we can go further than Gawande – tending to people’s well-being beyond death and into eternity as they near the end of this life. Praying for opportunities to offer peace and hope to dying patients and their families underscores our care in these situations. God is at work and we are privileged to share in that work with him.
“Though we speak in this way, yet in your case, beloved, we feel sure of better things – things that belong to salvation. For God is not unjust so as to overlook your work and the love that you have shown for his name in serving the saints, as you still do. And we desire each one of you to show the same earnestness to have the full assurance of hope until the end, so that you may not be sluggish, but imitators of those who through faith and patience inherit the promises.” Hebrews 6:9-12
Dr Catherine Hollier Dr Catherine Hollier is a part-time GP in Newcastle. She loves cradle-to-grave medicine, whole-person healthcare and gentle camaraderie with her patients.
- Gawande, Atul. Being Mortal: Illness, Medicine and What Matters in the End. Profile Books. 2014. P182-183a, 249b, 252c, 259d.
- Hoddle, G. Being Mortal Book Review. Luke’s Journal. CMDFA. 2019. Laughter: The best medicine. Vol 24. No 2. p55 https://lukesjournalcmdfa.com/2020/01/09/book-review-being-mortal-georgie-hoddle/
- Kojima, G; Liljas, A; Iliffe, S. Frailty syndrome: implications and challenges for health care police. Risk Manag Healthc Policy. 2019; 12: 23–30. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6385767/
- Murray SA, Kendall M, Boyd K, Sheikh A. Illness trajectories and palliative care. BMJ 2005;330:1007. [Accessed 14 August 2019 – RACGP aged care clinical guide (Silver Book) 5th edition. Dec 2020.] https://www.racgp.org.au/silverbook
- Australian Bureau of Statistics, 2019.
- Australia’s health 2018 (full publication; 18Jun2019 edition) Australian Institute of Health and Welfare. 2019, p138. https://www.aihw.gov.au/getmedia/7c42913d-295f-4bc9-9c24-4e44eff4a04a/aihw-aus-221.pdf.aspx?inline=true
- Austin Health 2021. Advanced Care
- Sydney Local Health District, NSW ambulance authorized care plan.
- Sydney Local Health District, NSW ambulance palliative care plan. https://www.slhd.nsw.gov.au/btf/pdfs/Amb/GP_Booklet.pdf